2010 Fundraisers

It was another rough day.  The nurse called every two hours through the night last night to tell me Emerson’s blood gases were either getting worse or not improving, & in every instance her vent support was increased.  I arrived in the room this morning to find her even puffier than yesterday.

They continued to increase vent support, with sedation, until this afternoon when her requirements rose high enough that they had to paralyze her.  She is now totally paralyzed & receiving 100% vent support.  She is unable to move her muscles & is unable to breathe.  They’ve changed her vent setting to where they are now controlling every single breath – volume in, volume out, & rate.  If she continues to require more support they’ll switch her to a high-frequency vent.  This is the highest level of vent support available.

Eme’s kidneys are also not working.  This explains her increasing fluid status & is also causing toxic build-up in her system.  When the kidneys aren’t working properly they’re unable to effectively filter out toxins in our blood.  Pending lab results tomorrow morning, they’ll start dialysis.

She’s febrile tonight.  Pray it’s not a blood infection.  I’m not sure she could fight one off right now.

The doctor says this all can happen post-transplant & though she’s very sick, everything to this point should be reversible.  It’s 9:45 pm & already they’ve increased her vent settings yet again.

As for me, I still believe she's invincible - a coping mechanism I'm sure.  Beyond that I'm numb...

I’ll keep this one short as I really need to get some sleep tonight.  Emerson remains on the vent this evening.  The original plan was to slowly wean her today & possibly extubate tomorrow.  Unfortunately, though, she’s been requiring more support today & they’ve had to increase her settings several times.  As such, I was told she won’t extubate tomorrow.  When she will is unclear - she’ll let us know when she’s ready.

They’re giving her Albumin (a human blood product) twice daily with the Lasix.  This should help to better regulate her fluid retention.  She remains very puffy tonight.

Otherwise, things are quiet.  They continue to struggle with her high requirement for sedation, but have for the most part been able to keep her comfortable today. 

Another rough day…I swear I’m going to stop writing anything positive - even the slightest hint that she was “feisty” & things turned south.

I arrived in Eme’s room this morning to hear she’d had a rough night with pain management.  She looked awful.  Her belly was hard & distended, she was very bloated, and she was moaning in pain.  Her eyes were black & blue and nearly swollen shut.  She wouldn’t even let me touch her.  Things got progressively worse throughout the day & she was taken back to the OR early this evening.  Dr. Sudan opened her back up to locate the source of the bloating and distention.

The good news is the bowel looked pink with no obvious perforations.  She had severe ascites, though (peritoneal cavity fluid).  Her bowels were also very swollen indicating an ileus, or mechanical obstruction.  The surgeon suspects she has pockets of bacteria in the bowel temporarily causing the blockage.  This will take antibiotics & time to clear up.  She drained the fluid & sent it to be cultured.

Emerson is back in the room now & still on the vent.  The anesthesiologist said Eme was wheezing significantly, and her oxygen saturation bottomed out in seconds when the vent settings were turned down.  They have her heavily sedated tonight, so self-extubating shouldn’t be a concern.  The anesthesiologist also said her lungs are very wet & tight.  She said it sounds like a possible pneumonia, though it could be all this fluid she’s retaining.  There are no clear answers tonight.  The intensivist on-call just came in from home (12:30am) to look at Eme & to check her vent settings.  At the moment she's breathing hard & wheezing.  He increased the dose & frequency of her respiratory treatments.  She’ll be administered several inhalants & CPT treatments hourly through the night.

They’ve had Eme on PO Lasix (through the gastric tube) to help her urinate, and have now switched her to IV Lasix.  Still, though, her diapers are not very wet.  She’s also not absorbing her Prograf (anti-rejection med).  Her nurse said she’s on the highest dose she’s ever given a child her size, and still her levels are low.

That’s the news for today – wish I had something better to report.  I was pretty upset this morning, it’s been a rough several days.  Friday will mark 1 month post-transplant & she’s still in the PICU…not how I expected (or hoped) this would go.  The doctor said it will probably be 4-5 days before the distention starts to relax and she starts to feel better.  Maybe being sedated on the vent isn’t such a bad thing right now.

Emerson self-extubated this morning (and she managed to do that while heavily sedated & with both hands restrained!).  It is that feisty spirit that will get her through all this!!  She required oxygen & suctioning, but otherwise did okay off the vent & didn’t have to be re-intubated.

She’s been very lethargic & uncomfortable today.  They’ve been medicating her to help control the pain.  Dr. Grant re-opened most all of her original incision yesterday.  It was a big surgery & will take time to heal, again.

She needed a blood transfusion this morning & has had trouble regulating her blood sugars – they’ve actually been high!  She’s been on an insulin drip for much of the day.

I’ve had many glowing reports on last night’s wine tasting fundraiser at Amy’s house.  I heard everything was beautiful & a great evening was had by all!!  A million thanks to everyone who volunteered, attended, & sponsored the event.  

Check out the website from one of our sponsors, Wine Tours of the World – www.winetoursoftheworld.com.  If you’re ever in the market for the trip of a lifetime, they can customize a wine tour vacation just for you!!  It looks amazing – I’m adding it to my list of things to do (somedayJ)!  For now, I’m dreaming…

It was a scary day.  This afternoon Emerson’s intestines prolapsed & constricted at the site of her stoma (imagine a sizeable piece of intestine protruding through her stomach).  The stricture cut off blood supply to the prolapsed tissue & it started to turn “dusky” in color.  She was rushed down to surgery. 

Dr. Grant repaired the prolapsed intestine & re-opened Eme’s incision site to drain the fluid around her liver.  She also found an area of intestine with three large lumps & removed that entire portion of her new bowel.  Dr. Grant called pathology to view the tissue.  She said it didn’t look like PTLD, but we’ll have to wait on the path report to be certain.  PTLD is a form of post-transplant cancer that affects 20-30% of transplanted patients.  Let’s pray it’s not that.  Dr. Grant said the lumps may also be pockets of viral infection, possibly causing her fevers.  Again, we’ll have to wait for more information to know for sure.

The lab called during surgery to report that Eme’s blood culture from yesterday has grown a gram-positive organism.  As such, Dr. Grant removed & replaced her central line as well.

Emerson was unable to be extubated post-surgery and remains on the vent tonight.  She’s been laboring to breathe for a week now & needs time to rest.  She’s been acidotic, her blood sugar rose to over 450, & she remains febrile this evening.  They’ve given her bicarb & insulin and will check blood gases and blood sugars throughout the night.  We hope to be able to take her off the vent tomorrow.

I pray this will be a turning point for Eme – that the combination of draining the abscess around her liver & removing the “diseased” intestine will clear her fevers & put her on the road to recovery.  She’s due a break!

Emerson remains in the PICU & has tested positive for HHV-6 (Human Herpesvirus 6).  HHV-6 is not the virus that causes cold sores, chicken pox, shingles, or mononucleosis.  This virus infects white blood cells, specifically T lymphocytes.  Symptoms include fever and a distinct type of rash.  It is otherwise a mostly benign infection of infancy, but can be problematic for people with compromised immune systems.  In transplant patients on strong immunosuppressive drugs, as Emerson is, an activation or reactivation of HHV-6 can result in suppression of the bone marrow or inflammation of the tissues of the brain, liver, or lungs.  It can also be a predictor of fungal infections.  The nurse practitioner said the course for HHV-6 in a transplant patient can be long – sometimes months. 

Eme continues to run high fevers & now has a rash covering her whole body.  The doctors took a skin biopsy this morning to further test the rash for HHV-6.  The main goal is to exclude something else from also causing these symptoms.  They wouldn’t want to “blame” everything on HHV-6 at the risk of missing something else.  There is still some concern as to the fluid abscess surrounding her liver.  The infectious disease doctor said the CT scan should be repeated in about a week.  If the abscess has increased in size at that time, Eme will be taken back to the OR to have it drained.

Emerson had her feeding tube advanced into her intestines yesterday.  They squirted some contrast in the tube, though, & it refluxed back into her stomach – wrong direction!  She’s going back to Radiology today to have the tube advanced further, hopefully past the section of intestine that remains non-functional at this time.  If the refluxing doesn’t improve, they’ll put a second tube down her other nostril & into her stomach.  This will allow for feeds into the intestines through one tube & drainage of the stomach through the other - both at the same time.  She is having ostomy output, so we know something is moving through.  We need to suction out what is not, though, to keep her from gagging & retching with feeds.

Emerson had her third ileoscopy (intestinal biopsy) yesterday.  Again all “looked” good, but we’re waiting on the pathology report this morning.

Two things I’ve learned in the past 24 hours:  1) Transplant surgery is a medical science all its own.  Transplant surgeons see and react to things even “regular” doctors & surgeons miss.  Lesson learned – trust & believe nothing unless it comes from the mouth of a Transplant Surgeon!  & 2) July 1st starts a new year for medical Fellows, Residents, & Interns (I actually knew this one, but somehow forgot).  These are the doctors available in the evenings & on weekends.  They are also the first line of contact during the day.  On a whole, the “new” crew knows very little about anything, most of all your child.  Lesson learned – when direction comes from the medical team ask who is giving it.  And this ultimately takes me back to my 1st lesson learned…trust nothing unless it comes from a Transplant Surgeon (TS)!!!

So, what I found out this morning is that the new Fellow wanted to restart feeds this weekend.  The TS had no intention of ever doing so.  Thanks for all the guestbook messages in support of me advocating for Emerson.  In reality though, it didn’t take much advocating this time.  I didn’t have to “convince” anyone of anything…we were all on the same page.  Secondly, there was something on the CT scan after all – a pocket of fluid around Eme's liver, probably infected.  Somehow the weekend Surgery Fellow either missed it or didn’t think it was significant.  Not so…her weight was even up over 2 ½ lbs this weekend.  Hmmm, there was obviously fluid somewhere!  Unfortunately, Dr. Grant said it is very difficult to get to.  If access was easy she’d drain it.  However, it would require another surgery & she wants to avoid that if at all possible.  For now she’s treating with antibiotics & hoping Eme starts looking better.  If not, surgery may be required to drain & clean it out.

The nurse called at 5am this morning & said Emerson's respiratory rate had increased to 100-120 breaths/minute and she was working hard to breathe (nose flaring, chest retracting).  She’d also spiked yet another fever.  They did a chest x-ray & heart echo at that time.  She went into surgery to have a new central line placed at 7am & is receiving a blood transfusion as I write.  Poor Eme’s just having a rough go right now.  The TS said we have to resist the urge to react too soon, though, & just wait to see where it all goes.  We don’t want to put her through another procedure unless absolutely necessary.  The Intensivist this morning said he's amazed she got through the weekend without requiring the vent (breathing machine).  Hallelujah for that!

The TS also said this morning she thinks Emerson’s stomach may be triggering abnormal neurological responses, thereby accounting for the retching this weekend & her inability to advance feeds.  She still requires suctioning of her stomach tube most of the day.  The plan is to take Eme to Radiology tomorrow for NJ (nasal jejunal tube) placement.  This tube will be placed directly into her intestines & will completely bypass her stomach.  If successful, Dr. Grant said she’ll do a jejunostomy for long term use.  That is a hole through the abdomen directly accessing the intestines & would entail a continual formula drip around the clock every day.  Not exactly what we were planning or hoping for, but we’ll make it work if necessary.

In all, we started this journey with blind-faith in a group of surgeons we were told is “world-class”.  What I’ve found is that Emerson is, indeed, in the very best place – right here in the middle of Omaha, Nebraska.  The Transplant Surgeons here are amazing…operating in a different realm than most of us “normal” human beings.  If anyone can give her life, it undoubtedly is the remarkable surgeons here, doing God’s very best work!  I trust them implicitly & have great faith that they’ll find a way to get Emerson home!

 Evening Latest (9:15pm):

The results of the CT scan are more or less the same as last weekend - no significant changes to explain the retching.  That's good & bad...good they didn't find a surgery complication, but frustrating at the same time because it leaves us guessing now as to what's going on.  She's finally slowed down on her retching this evening.  They've been suctioning out the contents of her stomach all day.  Is it possible all this was caused by an afternoon of tube feeds into a non-functioning stomach?  Maybe...  I'm anxious to hear the transplant surgeon's opinion tomorrow morning.  If she were still retching every 10 minutes I'd insist he be called tonight.  She's a little more comfortable, though, so instead I'm hoping for a quiet night & some much needed sleep.

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Quick update (3:45pm): 

The head transplant surgeon came in & said no, we are not starting feeds again.  He thinks Emerson has developed an abcess in her abdomen.  She is heading down to CT for a scan.  A member of the surgery team just stopped by & said they'll discuss the results immediately and decide course of action (likely needle drainage or surgery, depending on extent and location of the infection).  If the scan shows nothing, they'll keep looking.  Dr. Langness said there is something going on.  She's still retching - it's been 21 hours, & she spiked a fever.  Everyone is on alert...

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Emerson had a rough night.  They started tube feeds at 10ml/hr yesterday afternoon.  At 6:30pm she started retching & vomiting.  They turned off tube feeds & gave her a dose of Zofran.  She proceeded to retch & vomit every 10 minutes, with no break, until around 6:30am – 12 hours straight!  Needless to say, I was up with her all night…elevating & turning her head with every episode so she didn’t aspirate her vomit/saliva.  The doctor ordered Morphine & Phenergan in addition to the Zofran and nothing even touched it.  She was sooooo tired & sooooo miserable.

Once she finally settled down (or passed out) I snuck away to my room and slept for 2 hours.  I’m back now & she’s retching again.  And the fellow (resident doctor) wants to restart feeds?!?!?!?!?! - over my Dead Body!  I’m usually very polite & level-headed…not this time!  Luckily we have a great nurse today – Kim (something about those Kims, we have 2 in Denver we love tooJ).  She knows Emerson & is a great advocate for her. 

Something is going on & someone needs to figure it out before we put anything more into Eme’s little body.  It looks to me like she has an obstruction or maybe a complication from surgery.  She did just have a multi-organ TRANSPLANT 2 ½ weeks ago.  At very least feeds need to bypass her stomach for a while – it’s obviously not working!  I don’t think it’s the flu…no one is sick & she hasn’t been outside of her room at all.  What’s more, everyone who comes in wears a sterile mask, gown, & gloves.  Plus nothing is settling her stomach & she looks terrible.  Someone better come up with something today, I’m not comfortable with this…

We had a visitor yesterday!!  Scott Arnold (he’s our neighbor in Monument & works with Jim) is in town for the Olympic swimming trials.  His wife, Carol, is associated with the Olympic Swimming Committee and is working the event.  Scott joined her for the long holiday weekend.  How unexpected that someone I know just “happens” to be in Omaha, Nebraska…of all placesJ.  I really enjoyed his visit – it was great to see a familiar face from home!  And Eme enjoyed it too…she put on a good show, laughing & moving around all afternoon.  Scott said he was anxious to get back to Phil Long and pass on the good report!

What a difference a day makes around here.  Sadly today took a much different turn.  Emerson spiked a fever around 9am and has been spiraling downward all day.  She was transferred back to the PICU around noon and they’ve been working hard to bring her fever down most of the day.  She’s been shaking, vomiting, mottled, pale, & non-responsive most of the afternoon.  The doctor changed her central line over a wire & wrote for morphine, but her heart rate remained over 200, resp rate 80-100, & fever 105°.  The doctor came back and placed two peripheral lines – one in her stomach & one in her scalp.  They’re waiting for a high-concentrate glucose mixture from pharmacy & will pull her central line this evening.  He said she is clearly septic (yet again).  Her last episode of sepsis was Sunday – it hasn’t even been a week.  For now the nurses have ice packs under both arms & she’s lying on an electric cooling blanket.  These blankets are programmed to mechanically lower one’s core body temperature.  It appears to be helping at the moment.  Overall, though, it’s pretty scary – Emerson is very sick.

So, two nights on the floor & she’s back in the PICU.  It’s been a long day…I just got a pillow & blanket and plan to sleep in the chair next to her tonight.

Two weeks post transplant & Emerson is finally out of the PICU!  She was transferred to the 6th floor, room 6472, this afternoon!  And…I have internet access again – Woo Hoo (on both accountsJ)!!

Eme’s ileoscopy (intestinal biopsy) “looked” good today, but pathology reports won’t be back until tomorrow.  The doctor said he almost never sees rejection this early, but it sometimes shows up in the tissue.  It’s treatable when caught that early, which is why they biopsy so frequently post-transplant.

Emerson is feeling better & getting back to her old crazy self – with a slightly larger face (on account of high IV steroidsJ).  She’s still not accepting feeds well, though, and that is a little disappointing.  I’m trying to reserve “concerning” for later…it’s still early.

I’m finally able to send out email notification again when I update!  If you missed yesterday’s post, be sure to look back & find the link to Eme’s slide show.

Thanks for checking in!!